Overcoming the guilt of a medical diagnosis: My kidney disease journey

By Sharron Rouse

One day I woke up and noticed my legs were swollen. I thought my symptoms could have been related to a previous lupus diagnosis or recent high-risk pregnancy.  I was urged to see a doctor. And the results—a nurse told me that my kidneys were failing. I was floored! I was 31 years old with a whole life ahead of me.

Failing kidneys were a surprise to me. After a biopsy, I was diagnosed with focal segmental glomerulosclerosis (FSGS), a disease that causes scarring in the parts of the kidney that filter blood. The doctors could not explain why I had FSGS. 

After being hospitalized for a few days, I had to figure things out along with my family. How could I continue living my life after discovering something so serious? What adjustments, medications, dialysis, or even transplant would I have to endure?  Twenty years ago, there was not a lot of information available. I was scared and frustrated, but research helped me understand the disease, its effects, and that I was not alone. 

I began working with my doctors to manage the disease but my kidneys continued to decline.  I had a personalized medical treatment plan that was only doing so much to slow the progression, and a few years later, I was told I needed dialysis. Dialysis took a toll on me. I was tired both physically and emotionally. 

The next step in my kidney journey was a transplant. My sister was my donor. The transplant was successful, but I still didn’t know why all of this had happened to me. And then I learned about the APOL1 gene and the increased risk of kidney disease due to certain genetic changes.

After an at-home genetic test, I found out I had two copies of the APOL1 variant inherited from my parents, a variation connected to increased risk for kidney disease. APOL1-mediated kidney disease (AMKD) caused my FSGS.  

I now had answers.

The diagnosis liberated me from the uncertainty of having done something in my youth that could have caused all of this, and it alerted me to the seriousness of the disease and its effects. We are all born with the APOL1 gene, but those of us with ancestors from Western or central Africa, who may identify as Black, African American, Afro-Caribbean, Hispanic or Latino/Latina, may have mutated variations of the APOL-1 gene, with the presence of two high-risk genes G1 or G2. 

April 28 is APOL1-Mediated Kidney Disease (AMKD) Awareness Day, an annual campaign to educate the public, healthcare providers and patients about a genetic form of rapidly progressive kidney disease impacting people of West and Central African ancestry. I have hope because steps are being made to address a clear diagnosis and the impact of the disease in our communities.

Learning that you may be predisposed to having AMKD can provide some relief from the guilt of a diagnosis. Everyone should have a unique medical approach that best aligns with their healthcare needs. The only way to know if you are at risk for developing AMKD or if your kidney disease is the result of APOL1 variants is through genetic testing. Genetic testing, which is a personal decision, may be recommended if you have kidney disease of unknown cause and you are Black, African American, Afro Caribbean or Latino of certain African ancestry. There is no “one-size-fits-all” approach to healthcare. Talking to your doctor about your options is a starting point. 

Over the years, I have become an advocate and supporter of kidney disease research and awareness. I am deeply involved with the community through the organizations I have created and the ones I support. I feel proud to be a voice fighting for change. Organizations such as the American Kidney Fund, which focus on prevention, treatment and post-transplant care, are great resources and allies. You can also learn more about AMKD at KidneyFund.org/APOL1Aware. 

I hope that my story helps those who are struggling to understand their diagnosis and how to navigate the difficult times of dealing with kidney disease. 

The opinions expressed in this commentary are those of the writer and not necessarily those of the AFRO.

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